The town hall, open to the public, attracted nearly 60 people representing 18 organizations from greater Seattle’s cancer care world, including physicians, hospital administrators, insurance company representatives, policymakers and patient advocates. It served as a follow-up to HICOR’s Value in Cancer Care Summit, a “working meeting” held in January where partners shared ideas about ways to improve the overall value of cancer care.

“Our goal is to have a better patient experience at all levels – the care, the quality and the cost,” HICOR director Dr. Scott Ramsey said in his opening remarks. “It’s become impossible to ignore what’s going on with cancer without considering costs.”

Those costs are projected to reach nearly $175 billion a year by 2020 as the population ages and the incidence of cancer increases. And more of these costs will be borne by patients as deductibles, co-pays and out-of-pocket expenses rise. Currently, cancer medications account for eight of the top 10 most expensive drugs covered by Medicare and cancer patients are more than twice as likely to declare bankruptcy due to skyrocketing costs of treatment and medication. But this higher spending doesn’t always translate to better outcomes or increased life expectancy.

Cancer care, according to Ramsey, has become financially toxic.

A national discussion

HICOR is part of a growing national trend to examine – and staunch -- the rising tide of cancer care costs.

Its aim is to determine what works and what doesn’t with regard to providing the best value in cancer care then share that knowledge with others to improve cancer care as a whole. In a nutshell, it’s using the expertise of Fred Hutch health economists to give patients everywhere the most bang for their cancer care buck.

Keynote speaker Daniel Wolfson of the ABIM Foundation, provided national context to HICOR’s mission, comparing it to the American Board of Internal Medicine’s Choosing Wisely campaign, an initiative designed to spark conversations between doctors and patients about the overuse of tests and procedures and to support physician efforts to help patients make smart and effective care choices.

“Choosing Wisely and this initiative are the same in many ways,” he said. “Choosing Wisely is about leadership and partnership and there’s no better example in the country than what you’re doing here in Seattle. I think it’s incredible what you’ve begun to do.”

Meaningful measures

Tasked with a similar mission, HICOR and its stakeholders such as Virginia Mason, Swedish, Group Health, MultiCare, SCCA, Premera, Regence, the HealthCare Authority and patient advocacy groups like Gilda’s Club and Cierra Sisters gathered for a day-long meeting in January to come up with a list of proposed oncology value measures for Washington State.

HICOR’s guiding framework was that the measures first be meaningful, i.e., they needed to matter to patients, families and other health care stakeholders. But they also had to be practices where data was available and feasible to collect.

“How many of us in our research or clinical practices have heard terrific ideas of things to measure and then when we start figuring out how to do it, how many people it will take or IT platforms it will require, realize maybe it’s not feasible?” explained Dr. Thomas Brown, executive director of Swedish Cancer Institute.

Finally, the measures had to be actionable, i.e., information that could be acted on in an impactful way should HICOR’s research determine that room for improvement might be in order.

The top six measures for value in cancer care – honed from an original 750 proposed metrics -- were unveiled at the Town Hall. They include everything from rate of chemotherapy at end of life to improved guidelines for biomarker and molecular testing to ways to avert unanticipated hospital admissions.

Ramsey and HICOR co-director Dr. Gary Lyman introduced the measures then opened each up for discussion.

“If these are going to be valuable, we need buy-in and acceptance and if there are concerns, we need to hear about it,” Ramsey said, encouraging the audience to share their thoughts.

What followed was a candid discussion of the nuts and bolts of cancer care with physicians, policymakers and patients weighing in on everything from the evolving nature of palliative care discussions to emergency room visits driven by lack of access to physicians to the need for all patients to receive equitable cancer treatment.

“We know this is not easy,” Ramsey said while introducing the first topic, which covered conversations about hospice or palliative care and minimizing futile chemotherapy in the last few days of life.

Oncologists and advocates talked about patients who had been given the proverbial two weeks to live and gone on for months, years or even decades. Others discussed how the end of life “talk” is actually a series of delicate, nuanced conversations. One audience member expressed discomfort at trying to apply rigid metrics to an arena where there’s “so much variability by disease and by treatment.” Another pointed to patients who wanted to die at home in peace with family, but instead spent their last few days in a hospital undergoing invasive, expensive and pointless treatment.

Ramsey said he felt there was a need for a cultural shift away from the notion that not doing chemotherapy at end of life – often brutal to both patient and pocketbook – as giving up.

“I think one of the biggest barriers is the sense among patients and the advocate community that palliative care is giving up,” he said. “They need to hear that this is not giving up. It’s focusing on quality of life and a better experience in this journey that they’re taking through cancer.”

Each metric was discussed in detail by participants and the HICOR team after which Ramsey encouraged participants to send additional comments. He then offered up a timeline for deliverables.

Diving in

“Our job here at the Institute is to refine this,” he said, outlining the next few steps which will include devising a methodology for diving into the deep pool of cancer care data HICOR hopes to receive from partner institutions in order to determine what practices are producing the most value for patients.

Overall, Ramsey and Lyman said they were pleased with the Town Hall.

“I was very encouraged by the participation, the clinical insights provided and the willingness to be engaged in this important ongoing initiative to improve the quality and value of cancer patient care in the region,” said Lyman.

“We were thrilled to get so many comments from the audience,” added Ramsey. “They will help us put forward the best metrics.”

Patient advocate and breast cancer survivor Bridgette Hempstead, the founder of Cierra Sisters, said she was encouraged by HICOR’s efforts.

“How can you cut the cost of cancer care down? I don’t know,” she said. “But they’re off to a good start.”

Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has also written extensively about health issues for nbcnews.com, TODAY.com, CNN.com, MSN.com, Columns and several other publications. She also writes the breast cancer blog, doublewhammied.com.Reach her at dmapes@fredhutch.org.

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